Trust Your Gut: Tor’s LAMN Appendix Cancer Story

Tor is from the UK, but she lived in Taiwan for a little while, an experience made more memorable by a jolting diagnosis of appendix cancer. For years before that point, she had been struggling with baffling symptoms, including sporadic, stabbing stomach pains that doctors thought were due to overexercising or food allergies.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

In 2022, all of a sudden, Tor’s discomfort turned unbearable. She sought help at a Taiwanese hospital where she had ultrasounds and blood tests, all of which were clear. She kept insisting on more checks, though, because something inside her screamed that her condition was serious. She begged for and finally got a CT scan, which revealed a mass near her bowel.

The medical team initially suspected a twisted bowel, but they conducted an emergency surgery. It unveiled the true culprit: appendix cancer — specifically, a low-grade appendiceal mucinous neoplasm or LAMN. (Editor’s Note: A LAMN is a rare, low-grade, mucus-producing tumor of the appendix.) Tor was terrified by this diagnosis, all the more since she was by herself in a foreign hospital, far from family, with few friends who could drop by to comfort her.

Tor felt better when the doctors told her the mass was benign. She flew back to the UK to recover, only to be blindsided when she found out that the mass was, in fact, malignant. The revelation hit her hard, filling her with confusion and fear, especially since her pain and uncertainty contrasted with the happiness of friends celebrating birthdays and other milestones. Since she was single, she also had to deal with fears about being unable to meet someone and her desire to have children.

Tor was determined to reclaim control over her health, so she focused on regaining her fitness. She used to be into running, and, after surgery, she struggled to return to her old routines. But while waiting for the results of MRI scans, she decided to take a personal training course, a long-time goal of hers. It kept her mind occupied, but also gave her a fresh sense of purpose. Through it, she discovered a course in cancer exercise rehabilitation, which gave her an avenue to help others within the appendix cancer community by offering them physical guidance and emotional comfort.

Tor’s appendix cancer experience highlights the power of self-advocacy. Her story might have ended quite differently if she had simply accepted what her first set of doctors had told her. She also underscores the importance of staying physically active. Because she had been into sports before surgery, she was able to recover faster afterwards, and it also gave her a way to help others.

Watch Tor’s video to take a deeper dive into:

How a gut feeling and insisting on it despite what others said saved her life.
What it’s like facing an appendix cancer diagnosis alone and miles away from home.
From half-marathons to healing: Tor’s fitness-fueled recovery.
The emotional toll of cancer when your friends are celebrating life milestones.
How self-advocacy became Tor’s most powerful health tool.

Tor’s Diagnosis Facts

Name: Tor K.
Age at Diagnosis:
- 29
Diagnosis:
- Appendix Cancer (Low-Grade Appendiceal Mucinous Neoplasm or LAMN)
Symptoms:
- Sporadic stabbing pains in the abdomen and groin after meals, occurring over several years
- Fatigue
Treatment:
- Surgery: appendectomy

This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

This interview has been edited for clarity and length. The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story. This content does not replace professional medical advice.

Thank you for sharing your story, Tor!